December 4, 2018 A New Normal

After two long months living in a hospital room, we were finally able to bust up out of that joint. I don’t know the words to use to explain just how liberating that feels. Two months doesn’t seem that long compared to so many others who spend much longer under hospital care, so I’m learning to be thankful our stay wasn’t any longer than it was.

Our day started with visits from our care team explaining what the next few weeks may look like. Our insurance is basically approving us on a weekly basis (not by days, it’s by the number of sessions), so we know we will be in Birmingham until at least Friday, December 14th. I would not be surprised if they approved us for an additional week, putting us on regular outpatient discharge by December 21 due to the Christmas holidays and short staffing. I could be wrong, but if I had to make a guess, I’d say we are looking at being home for Christmas.

We had our final inpatient therapies today that were cut a little short due to Stevie the service dog coming in to see Annadelle. I know she is my child because she loves animals (especially dogs) as much as I do. I miss my fur babies so much. Dutch is currently being boarded at the vet so I know he will be overly excited to see us. We miss him and Ruby and Roxie terribly!

After therapy we left the hospital and got settled in at RMHC. Everything is very nice here. Check out how nice this family area is!

We are so thankful that we were able to get a room here, saving us a TON of money.

After we settled in, we made our first outing to Target. I expected the trip to go well because of the introduction of Caroline’s Carts at Target stores a few years ago. These carts are made specifically for kids and adults with special needs. Unfortunately, Annadelle was not able to support herself in the seat and kept sliding down so it was painful for her. To make matters worse, this Target is the only one I have been to that did not have a family restroom. Annadelle had soiled her diaper so I had to change her by bringing the cart into the handicapped stall, leaving the door open because the cart would not fit completely in the stall. Her pants were wet also, so I had to completely remove her shoes, pants, and diaper. I cleaned her, put her new diaper and pants on, then her shoes, then got her back in the cart comfortably. A Target employee was in the restroom and noticed me struggling and offered to help. She held the cart for me as I put her back inside.

I wanted to cry during the entire ordeal as I realized just how difficult being out and about would be with her in this condition. Over the last few days, Annadelle has gotten to where she can lock her right knee in and help support herself standing up, but she leans forward a lot and has trouble supporting her core at the same time. This makes it very difficult to help her use the bathroom, especially in a public place that is not equipped to help a handicapped individual. I am struggling to accept that this is our new normal.

We are now sitting in an actual bed with our sweet girl in between us snoring. She was so excited to be able to sleep with us again, and I’d be lying if I said I wasn’t excited, too.

We are even more excited about being able to go home briefly this weekend. RMHC allows us to take a 48 hour leave once every 7 days, so since we will not have therapy on Saturday or Sunday, we will travel back to Orange Beach for the first time in 63 days. We have already messaged Nicole and Matt about hanging out a bit and attending the Santa Drop at the Flora Bama.

Because we have tomorrow off from therapy, we are going to take Annadelle to the mall to see Santa. We are hoping to be able to do a few things we would normally do at Christmas time in order to disguise the fact that this Christmas is so different for her.

Friends, I hope you all know just how grateful we are for your support over the past couple of months. It is humbling to know there are so many people that care for us and our sweet girl. I ask that you continue to send up many prayers for our princess as we adjust to life with limited mobility, although we are confident she will make a full recovery. When we spoke to Dr. Ness this morning, she made a comment that many AFM patients being diagnosed now are making much better recovery than those diagnosed in years prior. She and her team were amazed to see how much stronger Annadelle was in her short time at Children’s inpatient.

I would also make a special prayer request for our new friend Kinley who was diagnosed with AFM in 2014. We were able to meet her mother, Kim, this week and talk about AFM a bit. Kinley has been making slow progress over the last few years, but I know the power of prayer can achieve so much more. Please add her to your prayer list, as well.

Thank you again! I will update more tomorrow. Be blessed.

2 thoughts on “December 4, 2018 A New Normal

  1. Chris Wagner

    So HAPPY for you guys and the progress 😊😇🤗💕

    So proud of you Annadelle, JESUS sure loves you and is seeing you through this. YOU will have the most AMAZING & BEAUTIFUL testimony to share with the whole world some day 🤗💕😇



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